Meet The Team

Our Management Team

Our co-founders Alex Johnson and Emily Crossley met after their sons were diagnosed with Duchenne muscular dystrophy. In this letter to newly diagnosed families, they describe the journey they have been on since that moment. They both set up charities, Alex with Joining Jack, Emily with the Duchenne Children’s Trust. The two charities have now joined forces to become Duchenne UK. In November 2017, Emily and Alex were honoured by the Prime Minister's office with the Points of Light award.

Emily set up the Duchenne Children’s Trust in 2012 after her son was diagnosed with Duchenne. Before that she was a reporter and anchor for Channel 4 News and CNN International. The Duchenne Children's Trust raised £3.5million in its first three years, to spend on clinical trials, research, and clinical trial infrastructure. The charity set up the annual Duchenne Dash, which brings in money for research and raises awareness around Duchenne muscular dystrophy. Emily has advocated on behalf of patients around the world. She's spoken many times in the Houses of Parliament. She is a member of the MHRA patient group consultative forum.

Dr David Bull is Director of Research for Duchenne UK. David spent 16 years as a research scientist at GlaxoSmithKline. His initial training was in neuroscience, studying novel treatments for Parkinson’s Disease and Schizophrenia, David then led the research team looking into the molecular biology of 5-HT receptors in terms of treating migraine.

David then moved into science development in the UK and USA and led the UK Learning & Development team, subsequently becoming VP Leadership & Organisation Development for GSK International.

Alex founded the charity Joining Jack with her husband, ex-rugby league player Andy Johnson, following their son Jack’s diagnosis with Duchenne muscular dystrophy in 2011. The rugby community came together to help the family and helped them create international awareness for Duchenne with innovative campaigns like #Link4DMD. The charity has successfully raised more than £2 million to spend on translational research and clinical trials.Alex has subsequently joined the board of United Parent Project (UPPMD) and has helped organise international awareness events like World Duchenne Awareness Day. She has represented the Duchenne community by speaking at international conferences around the world, workshops and meetings with the FDA, EMA, MHRA, NICE and at the Houses of Parliament. Alex was honoured to join the steering committee that helped organise a workshop with the EMA on exon skipping. Following the meeting the steering committee published an article in the Lancet. Alex completed training at a Eurordis summer school to become a trained patient advocate and is also a member of the MHRA patient group consultative forum

Lisa Kuhwald is Duchenne UK’s Advocacy Support Officer - this is a voluntary role.

Lisa is mum to 4 boys, Oscar, Casper, Felix and Herbie (Felix and his twin Herbie pictured). They live in Altrincham near Manchester.

She studied Chemistry at the University of Hull and worked as a teacher and in the pharmaceutical industry. Lisa now runs the family property business in Manchester, founded by her husband Karl.

They set up Team Felix in 2013, after their son Felix, then 2, was diagnosed with Duchenne. The goal is to raise as much money as possible, and as quickly as possible, to fund research into treatments to end Duchenne.

Sejal Thakrar is one of Duchenne UK’s Advocacy Support Officers - this is a voluntary role.

Sejal has a son, Shiv, with Duchenne and they live in North West London. Shiv was diagnosed in April 2014. Following diagnosis, Sejal gave up her career as a Customer Intelligence Data Analyst within the Telecommunications sector.

In January 2015, along with her husband Manoj, they set up ‘Smile with Shiv’ to work closely with the Duchenne community, in raising awareness and funds for Duchenne charities, as well as advocacy work.

Sejal has used her experience as a Data Analyst to assist in the analysis of surveys, carried out as part of our community engagement work, to better understand what patients and caregivers want from care, research and clinical trials.

Cathy Turner is the DMD Programme & TACT Coordinator, based at The John Walton Muscular Dystrophy Research Centre at Newcastle University, funded by Duchenne UK.

Cathy coordinates the TREAT-NMD Advisory Committee for Therapeutics (TACT). This is a unique multi-disciplinary and international group of leading academic and industry drug development experts as well as representatives from patient foundations and regulatory experts. A TACT review provides detailed guidance on the translation and development path of therapeutics programs in rare neuromuscular diseases, many of which have been for Duchenne.

She works closely with colleagues (in Newcastle and beyond) involved in all aspects of Duchenne diagnosis, care and research - from physiotherapists, clinical consultants and trial coordinators to lab-based research staff, patient organisations and members of international networks such as TREAT-NMD.

This means that Cathy can act as a link between Duchenne related activities involving these stakeholders and help to join-up efforts and initiatives which relate to Duchenne muscular dystrophy.

Emma Heslop is theDMD Hubmanager based at The John Walton Muscular Dystrophy Research Centre at Newcastle University, funded by Duchenne UK.

Emma trained as a biological anthropologist at Durham University and was awarded an MSc (Research) in 2005. She has been part of the muscle team at the John Walton Muscular Dystropy Research Centre at Newcastle University since October 2006 when she joined the TREAT-NMD neuromuscular network of excellence as assistant project manager.

Within TREAT-NMD, Emma was responsible for leading the work relating to ‘Network in Action’ for DMD and SMA and enhancing international collaborations. From 2009 to 2013 she helped form and coordinated the TREAT-NMD Advisory Committee for Therapeutics (TACT) and was subsequently the nominated first point of contact for industry enquiries to the network.

Before taking on the role as DMD Hub Manager, Emma was the RD-Connect Project Manager at Newcastle University in 2013 with responsibility for leading the strategic development and delivery of the project to ensure the objectives were achieved.

Dala Jenkin is a Team Assistant at Duchenne UK. Dala joined the team in May 2018 having previously worked as a lifestyle manager at Quintessentially, fashion buying assistant at Matches and Austin Reed Group and has also spent time working with autistic children. Dala has a First Class BA (Hons) in Marketing and Fashion from the University of Hertfordshire

Molly Hunt is Head of Communications for Duchenne UK. Molly joined Duchenne UK in September 2016 and has previously worked for a FinTech startup and an Interior Design studio. Molly has an MA (Hons) undergraduate degree in English from the University of Edinburgh.

Most read

Duchenne affects approximately 1 in every 3,500 boys that are born but only around 1 in every 50 million girls. It may be rare, but it does happen. We have been speaking to Feriel, a 26 year old woman living with Duchenne muscular dystrophy. She has written us a short blog about her experiences with Duchenne from diagnosis to now.

Our co-founders Alex Johnson and Emily Crossley met after their sons were diagnosed with Duchenne muscular dystrophy. They both set up charities, Alex with Joining Jack, Emily with the Duchenne Children’s Trust.

We are proud to share with you our first ever Impact Report, read about the very real impact we are having and the many things we have been working on over the past six years to end Duchenne.
Read more

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